The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Articles sorted by author: Mixed (1)

Articles by Cesar Quintero, USA

Sophisted Investigation by Cesar Quintero

Much reported controversy surrounds the public health agencies and their handling of investigation into the disease Myalgic Encephalomyelitis.   Surely the most advanced nations with legions of medical scientists would be motivated to meet the challenge and discover the cause of an epidemic striking down its citizens, which leaves large numbers permanently disabled.  Yet the response of the public health agencies has caused particular skepticism.  This has raised many questions.

Now this question may sound very odd, but consider: How would you Disguise a Disease ?

I doubt there could be too many ways . . . But if that were your intent, Let's see, where would you start --

Camouflage! First declare it is a New illness. (Brilliant!) Declare that there is no epidemic! (Tremendous) Spread the word it is not serious. (Spectacular!!!) Create a smokescreen by using a vague definition so that you can mix in many non-cases, and thus claim it is very hard to identify; then

Cover your tracks! Give the Disguised Disease a variety of New names. (Yes, a trivial absurd name, splendid!) Disassociate it from its previous established name, research, case studies, descriptions and diagnostic ICD classification. (Fantastic) Lets see what else could we do to disguise a disease

Create Confusion! We could tell Drs that this disease is "mysterious" and that there is no need to investigate, "Don't do any testing" (you won't find anything) Its a Mystery.


Name Change - Evaluation by Cesar Quintero

This report is more evidence that it is absolutely necessary to restore the name Myalgic Encephalomyelitis. I do not see this report as something to be given any blanket endorsement. They were not asked to propose a temporary name. Patients have been damaged by the govt. changing the name of ME to CFS. This fact is what they continue to cover-up.


Restore the Name by Cesar Quintero

My suspicion is that until we accept that the disease that we have is M.E.we will continue to be victimized and manipulated.


Myalgic Encephalomyelitis - A New Day by Cesar Quintero

Do certain herpes viruses have a special relationship with the polio viruses in the same way HIV and HHV6 work together. We may never know if the government continues to cover up the existence of ME by calling it fatigue and confusing the public and doctors and fostering mythical subgroups. Confusing the understanding of this disease by opening the door for the inclusion of a multitude of unexplained fatigue conditions and somatic syndromes that will choke off the support and investigation of Myalgic Encephalomyelitis.


Government Manipulates the Facts by Cesar Quintero

How long will the deception and fraud continue before the public calls for accountability and prosecutions for fraud ?

 Articles by Dr John H Greensmith, UK

Tamworth Herald Letters.
 
That there seems to be nothing physically wrong with you after having "been prodded and poked and had endless tests" ( Using Your Body To Learn How To Banish Unexplained Pain, Tamworth Herald, 19 July 2007), is no assurance that there is nothing physically wrong with you that has been missed, or is not yet known about.
 
Reverse Therapist Justin Kite joins those who assume that, if a physical cause is not yet known about an illness, it must be of psychological origin rather than that the physical one remains to be discovered.
 
Since we know that M.E. (Myalgic Encephalomyelitis) is a neurological illness and there is no evidence of a greater incidence of psychiatric history among M.E sufferers than in the general population, there is no good reason to think that he will be able to talk it better, any more than he could someone's broken leg, or make them feel more positive about having it.
 
Orthodox medicine may not yet be able to cure M.E. but there's no evidence that alternative treatments can succeed where orthodox have failed either.
 
Apart from the cost which, at £80 and more and hour, is more than some M.E. sufferers, on benefits, have to live on for a week, there can be the disappointment when it doesn't work for them. No one - apart from a real charlatan maybe - promises a cure but just offering hope of improvement that doesn't come at all, or last if it does, can cause distress, even suicidal thoughts, in those who have had their expectations raised many times then dashed.
 
Reverse Therapy is one of a number of radical treatments - others include Mickel Therapy, The Lightning Process and Emotional Freedom Techniques - which have no scientific validity or reliability and depend on belief to get better. Thus, if after treatment, the patient says they feel better, the therapist claims success for it but if they say they are no better, it may be said that they were negative, or somehow not right for it.
 
There is a worrying trend of people who claim to have had M.E., having tried everything, discovering one of these treatments, being sceptical at first but trying it and then - no one was amazed more than they were - they were cured, or at least had improved dramatically. Now, they have trained to be a therapist to offer the same to other sufferers, in a kind of pyramid healing process. Uncritical news articles, all over the country, are good adverts for business.
 
If any of these treatments worked at all, we should expect to find clusters of success around the therapists or geographical areas in which they are practised and, by contrast, people languishing ill where they are not. There is no such evidence. If Justin's claim of an 80% success rate were credible, we should expect numbers of chronically sick people to be tumbling. That isn't happening either.
 
It would be better to have no treatment at all than one which does you or your wallet no good at all.
 
ME Free For All.org is gathering evidence for a thorough appraisal of all these treatments - orthodox and alternative.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All.org
 
 

 
Sussex Argus Letters.
 
We always welcome news that any M.E. sufferer has recovered or improved and we wish Chloe Cross sustained recovery and continued improvement for the future (Road to recovery, Sussex Argus, 21 May 2007) but we go further than the local Sussex M.E. Group, whose spokesman David Butler (Letters, 23 May 2007) warns that the Lightning Process does not work for everyone with M.E. and that some may relapse after it.
 
If the Lightning Process works at all, for any of the vast array of illnesses it claims to help, we do not believe it will be of any value to people with Myalgic Encephalomyelitis, which is often carelessly bundled in with all other chronic fatigue illnesses, under the catch-all Chronic Fatigue Syndrome.
 
As with several other radical treatments (including Reverse Therapy, Mickel Therapy and Emotional freedom Techniques) there is, as some admit on their own websites promoting it, no reliable scientific evidence to support its underlying theories and it relies on belief in it to work.  Thus, if the patient says they feel better after treatment, it is possible to claim success for the treatment but, if the patient says they do not feel better, it can be claimed that they did not have sufficient faith or were, somehow, not quite ready.
 
There is a worrying trend of self-promotion by people, who claim to have been cured by one of these radical treatments, then going on to train as therapists to treat others themselves, in a kind of pyramid healing process.
 
Recommendation by patient testimonial is likely to be heavily distorted in the treatment's favour. Those patients who say they did well, or who are going on to train as therapists, will obviously sing its praises but those patients who did not improve may not be well enough to speak out against it, or may fear doing so, especially if they are harassed with threats of writs for libel if they do.
 
A session costs as much for 1 hour as some M.E. sufferers, on benefits, have to live on for a week.  If any M.E. sufferer is considering putting that sort of money into unproven treatment, may we suggest they divert it to a serious biomedical research fund of an M.E. organisation.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All.org
 
 

 
*Letters - Sussex Argus*.
 
Whether former city financier Maurice Humphrys ever had M.E. (*Myalgic Encephalomyelits*), or some other illness brought on by fatigue or stress -which, incidentally, are often wrongly presumed to be inevitable prerequisites, since many M.E. sufferers never had them, nor have them now he has certainly recovered his ability to make money (*ME sufferer praises £500 therapy, Sussex Argus, 21 February 2008*).
 
Maurice is the latest in a line of people, around the World, to use a newspaper article to claim a cure for M.E. as a result of a radical treatment called the Lightning Process. Like them, he was so amazed and impressed, he has trained to offer the same to others, in a kind of pyramid selling healing plan.
 
Sadly, people who have been desperately ill for decades and tried everything going are easy prey for any straw offered, suspend their critical faculties and part with money they can ill-afford. Incidentally, although a figure of £560 is typically charged, we have heard of much larger sums changing hands.
 
An hour's session costs as much as M.E. sufferers, on benefits, have to survive on for a week and need more for essentials than the therapist does for luxuries, or Phil Parker, the founder, does in franchise commission.
 
There is no independent scientific evidence for the treatment practised by this secretive group. There are only recommendations from those who claim to have been helped by it but not a word from any dissatisfied customers, who may be too ill to speak out, or fear the consequences if they do.
 
By putting the onus on the patient to believe in getting better, Lightning Process advocates have it both ways: if the patient says they have recovered, they claim success for the process; if the patient says they have not improved, it can be said they were negative, or somehow not ready for it.
 
This organisation joins with other M.E. support groups in advising against all unproven treatments, which may have no lasting benefit or, in some cases, do harm.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All. org
 
 

 
*Letter to the Editor of The Glasgow Herald, Charles McGhee*.
 
Cc: Martin Greig, Sports Writer.
 
I hope - in the interests of seeing all sides of an argument and because the consequences for M.E. sufferers could be so serious, even potentially harmful - that you will allow the same space and prominence to my response, as you did to Martin Greig's article, promoting Mickel Therapy and the talk to be given by it's inventor, Dr David Mickel, in Glasgow, on Saturday 17 May 2008 (*My body told me to rest: I got better by doing the opposite, Glasgow Herald, 28 April 2008*), which prompts it.
 
Before embarking on any course of treatment - including Mickel Therapy - M.E. (*Myalgic Encephalomyelitis*) sufferers would be well advised to weigh up what is known about the therapy being offered and learn from other areas of medicine in order to better understand any possible risks or consequences.
 
It is a quite legitimate, understandable, early step in any scientific enquiry to set out with a theory. The traditional approach is to test a hypothesis and, once it has been proved valid and reliable, with a high degree of probability of repetition, usually 95% or 99%, accept that the suggested treatment is appropriate and safe. Often, treatments are tested thoroughly under laboratory conditions, or on animals, before they are given to patients, to maximise safety.
 
In M.E. research, the approach has too often been to skip the testing and expect M.E. sufferers to be guinea pigs (for example in the PACE -* Pacing, graded Activity and Cognitive behaviour therapy: a randomised Evaluation*and FINE - *Fatigue Intervention by Nurses' Evaluation* - trials, which are being carried out on patients before the results are in and have been assessed, a practise which would be unethical in some drugs and animal experiments).
 
No one, as yet, has a cure for M.E. but some people claim to have treatments which "help" people with M.E., though the ways in which this help are clearly observable, such as a return to some measure of a previously healthy life, like returning to work or school, are not always obvious.
 
When people have been ill for long periods of time and have tried everything suggested without success, they tend to be less critical of and take bigger gambles with, more radical treatments. There is, undoubtedly, an opportunity for charlatans but, even when the practitioners are well-intentioned, reputable and honourable, they only have a theory. Interestingly, the advocates of different radical treatments advance different theories of M.E. with equal firmness that theirs is the correct one - the hypothalamus (Mickel Therapy), amygdala (the Gupta Programme), adrenaline (the Lightning Process) - yet they all remain unproven theories.
 
No one - not even the practitioner - knows how they work. There is no scientific evidence for them. They are not approved by any medical organisation. They have not been independently reviewed and rely only on recommendations from people, who claim it has helped them, not balanced by any dissatisfied customers, who may be too ill to speak out or fear the consequences if they do. They are often, quite secretive, pyramid-sold treatments, practised by a motley crew of people with disparate, indefinite, qualifications, such as 'life coach'. There are no follow-up studies, or statistics available, to check  whether M.E. sufferers relapsed; anecdotal evidence suggests that many do. A single session often costs as much as some people, on benefits, have to manage on for a week. They rely on faith and put the responsibility to get better squarely on the patient. Thus, if the M.E. sufferer says they feel better, success is claimed for the treatment but if they say they have not improved, it may be said the patient was somehow negative or not ready for it.
 
In other areas of medicine, treatment is given even when the causes of an illness are not fully understood and the scale of possible side effects of treatment is unknown. The stakes are high. For example, we are now seeing some of the undesirable after-effects of chemo- and radiotherapy; I'm sure that the people behind Thalidomide had nothing but good intentions; frontal lobotomies seemed a good idea at the time. This is not scaremongering. We know, for sure, these things happen; we do not know, for sure, how many cases there are of damaged M.E. patients and whether any improvements would have been achieved without any treatment at all.
 
It is probable that there are many more M.E. sufferers, who have been badly affected by a particular treatment than we know about because the victims are too ill, after it, to speak out; some are daunted by the energy required to respond publicly; some fear threatened litigation, even bullying. We simply don't know the figures because the work hasn't been done. Furthermore, claims of success for M.E. patients do not take account of later relapses, again because follow-up studies have not been done and the statistics are not available.
 
It is also possible that the success doesn't belong to the therapy claiming it because the patient may not have had M.E. at all but some other illness misdiagnosed. Or, credit may, instead, belong to some other intervention taken simultaneously, which has not been considered, in a multivariate analysis. Or, improvement may be due to the passage of time, during which resting has had an ameliorative effect. Indeed, pacing is recommended as the treatment most likely to show a beneficial effect by most M.E. sufferers, though it does require discipline and is easier said than done.
 
For some, it's too late once the damage is done. Patients considering any exercise treatment, even in clinics with recommended therapists, should take note of the experience of M.E. sufferers who had well-meaning advice from GPs to exercise and finished up in wheelchairs, or bed bound, from which they have not recovered their previous level. There is also experimental evidence, in this country and in Belgium, that even the more orthodox recommended treatments have no lasting benefit for people with M.E, or leave some irrecoverably worse than before.
 
 The advice of this Research Psychologist and 20-year M.E. veteran is that it is better to have no treatment at all than one which does you no good, or leaves you worse after it. Remember, the burden of proof is on those recommending the treatment, not for patients to acquiesce for any other reason than firm evidence.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All. org
 
 

 
*Lowestoft Journal Letters*.
 
The Lightning Process may well be "thriving" because of the free advertising it is getting in articles such as this one (*Ex-sufferer champions ME therapy, Lowestoft Journal, 20 June 2008*), featuring Kate Simpson, who sells it on, in pyramid-fashion, after claiming that it brought recovery, at a quite miraculous speed, when all other treatments had failed.
 
There is no reliable scientific evidence that the Lightning Process works for any of the conditions listed on its website but it is especially doubtful for M.E. (Myalgic Encephalomyelitis), an acknowledged neurological illness, which it heavily exploits with before/after treatment photos in its advertising campaign. The majority of people with the diagnosis M.E. would be able to be amongst those who "travel all over the UK and from abroad" because 25% of them are housebound, or bedridden and the remainder are mostly just not that mobile and are, therefore, it is unlikely that they would "get well with us."
 
It is unknown and unexplained how the Lightning Process works; it is not approved by any orthodox medical organisation; it has not been independently, scientifically, tested but relies, one-sidedly, on references from former patients - sometimes now turned trainers - who say it worked for them. It is practised by a disparate group of people with diverse and vague qualifications, such as  "Life Coach" for example, with no recognised universal standards. The trainers, who are franchised by Lightning Process inventor Phil Parker, in return for a training fee and a percentage of the take, appear to be sworn to secrecy about what will happen in a session, until the patient parts with the money. It's quite a costly business. A session costs as much per hour as some people with M.E., on benefits, have to live on for a week. The final total figure, most often quoted, is £560 but we have heard of people who have paid much larger sums. The Lightning Process relies on faith and on cooperation by the patient so, if the patient says they improved, it is possible to claim success for the Lightning Process but, if the patient complains they are no better, it is possible to say that they were uncooperative or somehow not ready for it. Perhaps, worst of all,it offers false hope that will not be realised in most cases. Lightning Process advocates appear to be equally secretive about the success rate, without relapse, compared with those who remain so ill with M.E. that they may be discounted from the statistics.
 
Yours sincerely
 
Dr John H Greensmith
 
ME Free For All. org
 
 

 
For more by Dr Greensmith, see: http://www.mefreeforall.org

Articles by John Sayer, UK

THE UNDESERVING ILL - A WARNING - by John Sayer

It is my belief that the current - almost frenzied - campaign to psychologise M.E. and similar conditions is part of this propaganda and represents a dress rehearsal for the wider application of the psychosocial classification of a new "underclass" of "the undeserving ill", stripped of some of the very rights the Second World War was supposedly fought for by the Allies.


THE TRAVESTY OF SO-CALLED "M.E. TREATMENT" by John Sayer


"THE PSYCHOPATHOLOGY OF FUNCTIONAL SOMATIC SYMPTOMS"  - a review by John Sayer


OPEN LETTER TO DR. NYE by John Sayer


See http://www.sayer.abel.co.uk/MES-Narticles.html for more articles by John Sayer

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Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95